Wednesday, September 24, 2014

Those moments when you feel the weight of special needs parenting

The day was crisp and sunny, with all the promise those early days of fall hold. At lunchtime, I headed out of the office to take a walk and...discuss pants. Specifically, pants that would work for Max.

I got on the phone with the head of the occupational therapy department at Max's school. I'd reached out because I was concerned that we hadn't yet found a firm solution for helping him pull his pants up and down. Max has made amazing potty progress, most recently staying dry overnight. But the fine-motor challenges make manipulating his pants tricky for him. Not being able to handle them on his own is impeding his toileting independence.

I've had ongoing conversation about the pants situation with the OT at school and the one who sees him at home. It's sometimes fallen off the top of my to-do list Recently, at the suggestion of the school OT, I bought Max a bunch of sweatpants one size too large so sliding them down and up would be easier. He's mostly using his left hand (his dominant one) and managing to yank his pants down and then kinda-sorta up, but it's a struggle. His private OT recommended sewing on loops on for him to grasp. None of the adaptive clothing I've seen online has been right for him.

I strolled down the block, people hustling by as I said things like, "Maybe it would be a good idea if he had a loop to grasp just on the right side of the pants" and "I think the physical therapist should weigh in too." I listened at she noted how long it takes for someone to pick up a fine-motor skill—up to 5000 times of doing an activity.

To me, though, this wasn't a matter of Max needing time to ace a skill. He needed the tools. Specifically: a pants solution. "I want to be really clear, I know that it takes a long time to learn skills but what I'm saying is we need to come up with a definite approach," I said. And she said she'd check with the team and get back to me.

I hung up and felt the sun on my shoulders. I looked around at people on their iPhones and doubted that any of them were trying to figure out a pants approach. Or that they'd ever known from pants challenges in their lives or, for that matter, fine-motor skill challenges.

Mostly, I don't have have time to consider the volume of things I deal with for either one of my kids, and that's good because if I did I'd promptly keel over. Like most moms, I just go go go, do do do, make it happen happen happen. Those of us parenting kids with extra needs take comfort in knowing that a team of people are there to help guide both us and our child. And: COFFEE. We take comfort in coffee.

Then suddenly, you're walking down a busy street in the middle of New York City and having A Moment. Doubts swarm your mind: Why has this taken so long? This isn't fair to him. What about shirts? He can't put those on himself, either, and you haven't even given that much thought. Are you on top of things as much as you should be? Are you doing enough to enable him? What else could you be doing? What are you not thinking of?

But you can't go there. You will not go there. Because the answer is: You're doing the best that you can.

And you take a deep breath and head back in to work.


  1. Your doing the best you can. Thanks Ellen. I needed that not as a parent of a child with special needs but as a teenager with one sided mild sensioneral hearing loss. For the first time in my life Im really disliking my disability because of the problems its causing me in trig. Its complicated but boils down to if I can hear the material I cant comprehend it. But Im doing the best I can. Thanks and I hope you find workable pants for Max.

  2. Would wearing sweat pants with over-sized suspenders help at all?

  3. Make them and market them, Ellen!!!! Nice sideline business :)

    I am still the ultimate pants buyer, Ms. 18 is short (5 ft on tip toes), short in the leg, round in the waist and even the ladies petit sizes are too long. But from the very beginning it was a challenge to find pants that were easy to pull on and off - I think she mastered zippers and buttons at about 11 or 12? So for many years I needed shorter pants, elastic waists and stylishly cool. Not an easy combo. I love boys in track pants so you're good there! Not so much when all the girls are wearing skinny jeans or flares... VERY hard to find!

    These days if I see them I buy them! Right now I am totally loving the high waist jeans because they stay up on Ms. 18... the low riders were very wrong for her... actually for most teenage girls but that's another story :)

  4. Independent dressing is a concern for our 18yo daughter with moderate CP as well. She does find with elastic band pants, but as a teenage girl, she wears jeans to school, not sweatpants or pajama bottoms. *sigh* Keep at it. You're doing great!

  5. Oh, Ellen! These "little" things add up to so much time, energy, and stress! I think it's time for coffee, wine, or chocolate (okay, all three!). I wonder if a group that supports adult stroke patients might have some ideas. I wonder also about a grabbing tool that Max

  6. could operate with either hand and could hang from his shirt or fit in a pocket...these ideas come from a caring but inexperienced in the domain of special needs parenting person (and also one having tech problems!). Feel free to ignore!

  7. I broke down for this very reason this past weekend. Will we ever feel like we're doing enough? Every day is different, honestly. Some days you just cant help your mind from going there. Thankfully there's coffee to calm things down. Thanks for writing this. :)

  8. Sigh. Amazing how little is available and how creative parents have to be! I'm struggling to find the *right* PT for my neurotypical teen with hypermobile joints. Stretching is out. Strengthening and stabilizing joints is in, but there seems to be limited knowledge in the PT community as to how to do anything other than rehab.

    I like the idea of loops. Perhaps stretchy loops on both sides, with a non-stretchy "cross bar" across the front -- pull on the middle to pull both sides up, with the stretch in the loops allowing for up and down? Not sure what to do for underwear -- perhaps boxers with a similar arrangement? To some extent this seems like an engineering problem, of all things -- maybe ask for some help from the folks at NJIT :-)

  9. Ellen, whenever I read your posts I marvel at what an awesome mom you are. But what is even better, in my opinion, is how HONEST a mom you are. It makes us readers like me who, even though we do not have firsthand experience with a child who has special needs, can relate to your feelings of frustration and stress about being a parent. We all worry we aren't doing enough for our children and when all the little things pile up, it is overwhelming! And yes, thank goodness for coffee. I have no doubt that with a lot of trial and error and lots of practice, Max will achieve this milestone!

  10. Try using a jump ring for "fly"-type zippered pants.

  11. There is a grandmother who started her own company because her granddaughter (i think) couldn't find pants that she could be independent with and still be stylish and comfortable. I know they make boy and girl styles and you can customize all sorts of things on them. I believe the company is called Downs Designs. Might not work or be the right sizes but then again, they might. My daughter is only three so we can get away with leggings and tunic tops but I've been following others who have been battling this same problem with their older kids.

  12. Thanks so much for this, Ellen. I have been having an overwhelming week as well. Three weeks into the new school year and my girl (with her immense expressive language challenges) was getting called out for copying one sentence from an internet source in a three page essay she had to write. Everything else was hers. No celebration of the 3 pages she painstakingly wrote on her own. Just a call to me about "plagiarism." Sigh. And she has acne that we can't see to get treated. And she gained weight when we spent the summer getting my mom in-home care now that she has dementia (so it was a boring summer for a 16-year-old. And now the 16-year-old wants to go to see the new My Little Pony movie tomorrow -- *so* not cool with her peers, so not "age appropriate". And I forgot to get the neuropsych eval to the guidance counselor this summer so she can have her accommodations on the college exams because I was so focused on figuring out how to get my mom in-home care. So basically I should be wearing a t-shirt that says #badmom on one side and #specialneedsparentingfail on the other. I just can't do it all and it makes me sad. I'm failing my girl no matter how hard I try. And I won't even mention the disasters that I've had at work. Those I barely care about.

  13. I feel you. We had a similar issue with our 13 year old - and the elastic band waist helped, until he got older and more "curious about things." Motor issues are still an issue for my son (who has autism) when it comes to toileting. He really struggles with wiping. It's so hard and some days, I think I can't do. And how unfair it is for him, because he really tries. But thankfully, the next day we are ready to tackle it again!


Thanks for sharing!

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